Sharing individual participant data from clinical studies: a cross-sectional online survey among Italian patient and citizen groups.

ABSTRACT:

Objectives

To gather knowledge on the current debate, opinions and attitudes of Italian patient and citizen groups on individual participant data (IPD) sharing from clinical studies.

Design

Cross-sectional online survey.

Setting and participants

A 22-item online questionnaire was sent by email to 2003 contacts of patient and citizen groups in Italy. We received 311 responses, checked for duplicate respondents (16); 295 single groups responded, 280 providing questionnaires eligible for analysis (response rate 15%). Ninety (32.1%) dealt with oncology and palliative care, 175 (46.2%) operated locally or regionally and 136 (48.6%) were involved in clinical research.

Outcome measure

Data on Italian patient and citizen groups' self-reported knowledge, attitudes and o

SUBMITTER: Colombo C 

PROVIDER: S-EPMC6377545 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature